I am a Congenital Diaphragmatic Hernia (CDH) baby. My diaphragm developed with a hole in it and my organs were misplaced in my chest cavity. The organs pushed on my lungs, causing one lung to be very small. I was born on October 9, 2007 at Johns Hopkins. Now it is three years later: I am saying a bunch of words, I still receive foods through a g-tube and am on oxygen while I sleep. I can't walk yet, but believe I can out scoot anyone! Here is the story of my amazing and patient recovery.

Wednesday, March 11, 2009

Wyatt's one year anniversary at home.

March 12th marks a very special day in the Koger household. One year ago today, our little baby boy Wyatt came home after 5 long months in the hospital. What a joyful day! Just to think where we started and where we are today, makes me believe in miracles and the power of God. I know how lucky we are to have Wyatt and I know how lucky we are for the progress he has made so far and I am very thankful. It is taking an army of people to help get Wyatt where he is today. First, we are very thankful to all of his doctors. Doctors made life or death decisions, especially in the early days... the first 13 days of life.... should Wyatt go on ECMO? When should he be taken off? Should the cannulas be taken out after surgery? When should the repair surgery take place? Does he need a shunt? These were all life changing decisions that doctors had to make, and fortunately for us they made the correct ones. We were told that if he was taken off ECMO just a couple days earlier, he would not have survived. We were told that if he had his cannulas still in his neck after surgery and did not have the silo of organs, he would of bleed to death hours after surgery. So thank you to the doctors who made those life changing decesions. I remember going to the hospital and sitting next to Wyatt just being his Mommy, but not knowing what the future would be like... would he survive? would he be able to talk?(after the vocal cord perisis), what would his brain function be like? (after the head bleed) It was the unknown.

We are thankful to all the nurses and doctors who cared for him during his recovery in the hospital at Hopkins and Mt. Washington and to his current doctors. I know some people (the VP at Mt. Wash) thought I had too many things in Wyatt's crib and that I stimulated him to much. I am so glad that I persisted to treat him like a normal baby while being hospitalized. I encouraged volunteers and child life to hold him and play with him, I encouraged therapy to use their entire allotted time with Wyatt and not just for 15 minutes, we had books, mobiles, toys, and I kept the lights on around his crib during the day. I made sure that someone was with Wyatt day and night, even when I returned back to work. I saw babies that hardly had any visitors and they just slept the day away... I was adamant not to allow this for Wyatt because I know that a brain in an infant adapts to anything and grows like crazy. The only way Wyatt could overcome the ramifications of his brain bleed is to allow his brain to grow and be nurtured. It worked!!! Wyatt shows no signs of an IVH grade 4 (if you read about it on the Internet, it's very scary).

Today, I encourage his home nurses to treat him like a normal child and to play with him constantly, to read to him, play music, and do therapy. I have learned that parents are their only child's advocate.

Since we have been home, Wyatt has been in the hospital five times for three reherniations and two respiratory viruses. I am fully aware our "adventure" is not over and I manage one day at a time. However, Wyatt is home, happy, and healthy and I could not ask for anything more.... Thank you family, friends, doctors, and nurses. Also, thank you to the people that sat with Wyatt while I had to return to work, especially my parents, Pam, and Paula.

Pictures of Wyatt at 17 months old (Now)Wyatt eating a pickle...

Wyatt and Chloe drawing on the driveway together...

Pictures of Wyatt at 5 month's old... Chloe and Wyatt meeting for the first time ever.... Going home for the first time...

Home at last... March 12, 2008

CDH News...Our thoughts and prayers go out to Addison's family... Addison lost her battle with CDH at 3 weeks old after 11 days on ECMO. Please keep their family in your prayers.

Happy First Birthday Sofia!!!!!!!!! Sofia turned one and she has come a long way after time on ECMO and reherniation. She is now off oxygen and weaned off her ng tube. Check out her blog for some cute pictures of her!!

New CDH baby- Maxton is fighting hard and doing great. Read about his story here.

Mark your calendars for CDH Awareness Day on March 31st. Wear turquoise in honor of Wyatt and all the CDH babies. Send in a photo of yourself, your family, your co-workers wearing turquoise for a special slide show. Spread the word!!!! Also, Wyatt received numerous transfusions of blood, I encourage you to donate blood in honor of Wyatt and all the CDH babies.

Wyatt at 3 Years Old

Wyatt at 4 months old

Blog Archive

Hurdles that I faced and achieved!

After birth, I was placed on ECMO at Johns Hopkins Hospital for 13 days. On day 13, I had a surgery to repair my hernia and was removed from ECMO, but my organs would not fit in my abdomen. I had a silo for a week and then surgery to place the organs back in the abdomen. Then, part of my intestines re-herniated into my chest cavity two months later and I had another surgery to repair that. After my first surgery, I experienced an intraventricular hemorrhage in my brain and at four months old I received a VP shunt. After I was extubated, I learned that I have right vocal cord paralysis. Then I had g-tube surgery and after I finally got to go home after 5 longs months at Johns Hopkins and Mt. Washington Hospital! Only for a few weeks, though. In mid-April my intestines reherniated again and sent me into surgery. I came home, and had a long run before my THIRD reherniation in the beginning of September on Labor Day weekend in 2008. Then I was hospitalized for twice during the winter 2009 for two respiratory infections. Well, I almost lasted a year until my next surgery! Just this past June, in 2009, I had surgery to wrap my stomach around the esophagus, a nissen. This has helped with my reflux and my hiatal hernia. I will be 2 in October, I love scooting around but refuse to stand up and walk. I am a little miracle and thank God, my doctors, my nurses, family, and friends for my strength, my fight and a happy life.